So much has happened since the last blog, it's hard to know where to begin, so I'll do it chronologically:
Mesothelioma UK 5th Patient and Carer Day
On 2 October, we went to the Patient and Carer Day in London, where we listened to a range of speakers from the UK and abroad. For me, the stars of the show were the patients themselves, Debbie and Mavis (whose blogs you can access from the links top right) as well as Graham whose PETAL philosophy stood us in good stead last year.
It was wonderful to meet face-to-face so many people who had been in touch with us electronically......not just those named above, but also Heather, who was one of the first people to contact me through the Macmillan website and some of the meso warriors from the Facebook group. Although he couldn't be there in person, being in recovery from an operation, even Dr Andrew Lawson (link top right) sent a positive message and amazed everyone with his plans for long distance cycling in the Far East next year. For a conference where a high number of those attending were suffering from a terminal illness, it was a pretty vibrant event!
We also learnt some surprising (and not so surprising) facts
- the majority of mesothelioma patients are not offered ANY active treatment
- 80% of meso patients don't have access to specialist surgery
- if just 1% of the money spent on litigation, meso healthcare and benefits was diverted into research, it would be a huge step forward - lung cancers are amongst the most poorly funded of all cancers, even though they affect a large proportion of the population
- it's better to have chemo early
- those who have a response to first line treatment are more likely to respond to second line treatment
- UK patients can enroll in clinical trials in USA for free, but have to self-fund travel and accommodation
- there is no one data base of all mesothelioma clinical trials ongoing in the UK (no wonder no one really knows what's going on....)
- Cardiff University is at the forefront of research into immunotherapy, but its clinical trial of vaccine 5T4 TroVax is already oversubscribed before it's even opened